So bloody exhausted waiting for someone to die 4

@AgitatedGoose Do you know in your gut what your preferred option is - without thinking about consequences or the potential problems?

I would do whatever that is if it were me.

I'm self employed so luckier I suppose. I'm trying to finish off some work, which is hard as my concentration is shot, and have told clients I'll be back in April.

Oh wow, that's awful for you - and her.

Gosh, my mum started palliative care in October, and whilst she was eating and drinking less, sleeping more, and losing interest in the world, it wasn't until she was suddenly in a lot of pain a couple of weeks ago and stopped eating and drinking that the transitional phase really ramped up.

For all of us on this thread I hope and pray for swiftness.

It's a long road @Goldenspraint. My mum slept through my visit today. That's the second time she's done that this year. It starts up my deep hope that we might be getting towards the end.

It's over two years since my first peaceful 'deathbed vigil' overnight with her and she has rallied every time, but always to less and less of a life. It quite frankly does my head in. I hope you have more help and support in the hours and days ahead.

The Hospice at Home nurse came to see me yesterday. She was extremely kind, and we had a good discussion.

It seems Mum could go on for some time, or could die in her sleep tonight. There is absolutely no way of knowing or trying to guess.

The nurse acknowledged that it wasn't so much death that was so terrible for everyone, it was knowing that death was coming but not when and having to watch loved ones deterioirate and suffer when all we want for them is for them to be at peace.

I've been poised for it to happen which I think isn't a good state to be in because my own body is under a lot of stress. I think about our beloved pets and when they are dying we can let them go quickly without further suffering.

It feels so cruel having to wait for the body to decide when it's done. I think my mum is gradually accepting it's the end now, so perhaps that acceptance will help her body let go.

I've been talking to her about holidays we've been on, and trips we've made, and she can listen to me and respond for a few minutes, then she becomes too tired and only wants to sleep.

Every day I pray she sleeps her last, long sleep.

Thank you @Guineapiggiesmalls and @PermanentTemporary for your replies. This really is such a roller coaster. Yesterday I thought Dad couldn’t last much longer as he was making awful noises, his involuntary movements were worse and there was an awful rattle in his chest. Today he seems much more peaceful which I’m pleased about as it was so distressing seeing him like that. I only hope the hospice doesn’t push food or supplements. I’m also finding it difficult to know what to do about work as this could potentially go on for weeks. I’ve reduced my hours and condensed everything into three days but I’m a long drive away if I go home. Based on how Dad was yesterday I told my manager I wouldn’t be in next week but with how he was today I’d go back. I really can’t afford the reduced hours and don’t really want to be off sick either.

@AgitatedGoose my mum had chosen herself not to eat anymore and was admitted to hospice. When I arrived one morning there was a nutrition shake thing on her table. I spoke with the nurses to explain that it was her decision, and they and the dr agreed she wouldn’t be offered any more unless she asked. I would speak with the medical and share your concerns.

i was also concerned about the ‘two weeks’ that people are usually expected to be in hospice, and what happened at the end of that (especially if she was being fed!), they reassured me that she wouldn’t be discharged - it sounds a lot like your dad is in a similar condition to her, but I was terrified of her being sent home. It was more that they would assess condition after the two weeks and ensure hospice was still the right place for her, but if she had been given a bed now then it would be unlikely for that to change.

It’s a scary time. I wanted my mums pain to end, but really hated myself for this because it felt like i wanted her to die. It’s hard to have those feelings, but they’re completely normal. Sending you and your dad lots of love.

@AgitatedGoose I really hope the team can reassure you. I shouldn't think anyone is going to try to give him anything to eat or drink when he's not alert- those recommendations are most likely only so that they have some guidance if by any chance he does rouse enough to ask for something. Please do tell them your worries.

My Dad is now in a hospice but I’m really wondering if this has been the right decision. Yesterday the hospital consultant and I agreed that palliative care was the best way forward. They removed his naso gastric tube and I was told he’d only be offered food or fluids if he asked for it. I asked for a hospice referral as I felt it was the best place for him to slip away with dignity and that his end of life care would be more expertly managed. Dad remains in a semi conscious state and periods where he opens his eyes are very short. The nurse at the hospice said his hospital discharge summary said level
4 foods and thickened fluids. I’m absolutely horrified that they’re going to try feeding him as surely this is just going to prolong his misery and was the last thing I wanted. Obviously I dread the thought of Dad dying but I know he wouldn’t want to live like this and I get the impression he’s given up but his body is fighting on. I also
know hospice care is usually only for a few weeks so what happens after that.

Thank you.
Its harder because my aunt and cousins obviously want to visit her, but she's refusing to see them. It's down to my brother and I to tell them - which they are finding heartbreaking.

I hope you're coping @GoldenSpraint and remembering to take care of yourself as well as your Mum. How wonderful of you to give support to others going through awful times too!

@Gcn You poor thing - you've really got your hands full. Nursing my Mum (although our logistics were a lot easier than yours sound!) really brought my brother and I closer - I hope this happens for you too, and that your Mum has an easier time.

@AgitatedGoose Hope that bed becomes available!

Sending love to everyone going through this hard time at the moment.

So sorry to hear about your Mum’s deterioration @Gcn. This part of the journey can be one of the most desolate and lonely places especially if you can’t have your family around you or don’t have any family. Try to take each day at a time and allow for periods of self care if you can. Sending hugs.

Sending hugs to you @Gcn It's an awful time when things change and you suddenly find yourself trying to work through the end stages of someones life. And a lot of that is about waiting.

Be kind to yourself. ❤

Hope it's OK to join this thread. My mum was diagnosed with metastatic breast cancer about 16 months ago, on "palliative" chemo up until about a month ago. A fortnight ago she lost feeling in both legs (has a previous diagnosis of Ms), went for MRI and had diagnosis of leptomeningeal disease on Tuesday. She's gone downhill rapidly. Waiting for a care package, waiting for MDT morphine, waiting for incontinence products. First DN visit last Monday, she wasn't intending on visiting for a fortnight, but I called and she's coming on Monday.

I was only meant to be visiting for a few days, but have changed my flight home, need to go home, get laptop, see kids and then come back.

My brother lives an hour away but has been fab - though he's a single parent so is juggling carinf for his son with visiting mum.

The consultant has said short prognosis, but don't think mum realises that could mean weeks rather than months.

Hospital bed being delivered tomorrow.

Meanwhile I'm here on my own shitting myself. Haven't spoken to DP in days - I'll just cry down phone to him.

I've never felt so alone

Thinking of you both @AgitatedGoose and @GoldenSpraint

@GoldenSpraint Thank you. I’m really hoping that dad will hang on until a bed becomes available at the hospice. It looks like a lovely and peaceful place whereas the ward is very noisy at times. I hope things have been more peaceful for your Mum.

It's good that you've had a talk with the consultant and are agreed on a course of action you're happy with.

I'm sure the hospice will provide him with excellent care in his remaining time, and it'll give you the opportunity to spend some time with him away from a hospital environment.

Much love to you. ❤️❤️❤️

My Dad is now end of life after having a stroke just over two weeks ago. Today I had a long talk with the ward consultant and we both agreed that palliative care is the best way forward. Dad has absolutely no quality of life left and has gone from living independently to needing full nursing care. I’ve asked for a referral to a local hospice as I wouldn’t be able to cope with bringing him back to his home.

Oh I've been at war with the district nurses for about a year now with various matters. I've had to have my mum's surgery intervene on so many occassions just so my mum gets her needs met.

Absolutely - and the medicine for it is here ready to be administered. I too thought the whole point of the medication they leave with you was for it to be used to ease symptoms and make people's last days calm and pain free. Every step of the way I've had to push for medication.

They only wanted to give pain relief when mum was in pain, not to give it so she was never in pain. Just awful! I had to get the surgery to intervene then as well.

Thankfully my dear mum seems to have stopped being so agitated and is pretty peaceful - I so hope this lasts!

She says she hasn't had any lunch and is hungry (she hasn't eaten in almost two weeks), and accepts me saying she can't swallow at the moment. Which is true.

This is a good change from her earlier agitation as she just got more and more worked up and nothing would placate her.

The only small issue at the moment is her feeling "thirsty" but I know this is just her dry mouth, and drops of water on her tongue and lip balm are fixing that for now.

We had a lovely conversation earlier where I sat and held her hand. It was so peaceful and what I envisaged we would be doing near the end.

The surgery have spoken to the district nurses and any agitation from now on will be treated with the medication that's here ready.

She usually has a peaceful night, so fingers crossed.

Thanks so much everyone for continuing to look in on me, and say such supportive things. I appreciate it, and long for mum's gentle release soon.

Poor woman @GoldenSpraint. It does sound like she needs a tranquiliser, sedative or something to ease her. Surely that's the purpose of 'palliative' care?

Really sorry to hear that your Mum and you are having such a horrible time and hope she’s more settled soon. My experience of many NHS staff is that they don’t listen to
relatives and insist on continuing with their own agenda. I think it’s likely that your Mum is in pain or having frightening hallucinations.

This brings back bad memories for me too @GoldenSpraint - we had the same experience but with hallucinations and gabbling chatter towards the end which was completely out of character and distressing as it seemed to indicate pain or at least discomfort. We had a conversation with the medics at this point about increasing analgesics which did help a bit but it was a horrible time. Thinking of you - it feels interminable but it will pass and then the better memories come back.

Thank you so much again everyone.

I think my mum is experiencing terminal lucidity as she seems weirdly alert after mainly sleeping for a week.

It's horrific to be honest. She's almost ranting, but the district nurses just say she's chatting (?!?!?!?!) so won't give her anything to calm her and let her sleep. She is so distressed.

I hate that my mum's end is now full of distress instead of calmness.

Thinking of you @GoldenSpraint